title: For what am I participating? The need for communication after receiving consent from biobanking project participants: experience in Japan.
abstract: This paper introduces methods used to communicate with participants in the 'Biobank Japan Project (BBJP)', which is a disease-focused biobanking project. The methods and their implications are discussed in the context of the ethical conduct of the biobanking project. Informed consent, which ensures the autonomous decisions of participants, is believed to be practically impossible for the biobanking project in general. Consequently, the concept of 'trust', which is 'judgement and action in conditions of less than perfect information', has been suggested to compensate for this limitation. As a means to maintain the trust participants feel for the project, this paper proposes communication with participants after receiving their consent. After describing the limitations of informed consent within the BBJP, based on a survey we conducted, we introduce our attempts to communicate with participants, discussing their implications as a means to compensate for the limitations of informed consent at the biobanking project.
authors.affiliation: Department of Public Policy, Human Genome Centre, The Institute of Medical Sciences, The University of Tokyo, Minato-ku, Tokyo, Japan.
authors.forename: Maiko
authors.initials: M
authors.lastname: Watanabe
authors.forename: Yusuke
authors.initials: Y
authors.lastname: Inoue
authors.forename: Chiungfang
authors.initials: C
authors.lastname: Chang
authors.forename: Hyunsoo
authors.initials: H
authors.lastname: Hong
authors.forename: Izumi
authors.initials: I
authors.lastname: Kobayashi
authors.forename: Satoshi
authors.initials: S
authors.lastname: Suzuki
authors.forename: Kaori
authors.initials: K
authors.lastname: Muto
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D018070:Biological Specimen Banks / Q000941:ethics*; D002648:Child; D003142:Communication; D032984:Ethics, Research; D005260:Female; D055991:Health Records, Personal / Q000941:ethics; D006801:Humans; D007258:Informed Consent; D007564:Japan; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D010506:Periodicals as Topic; D011795:Surveys and Questionnaires; D055815:Young Adult